Palliative care

CorrectionRe: “The Messiha and Schiavo cases: third-party ethical interventions in futile care disputes”, by Thomas A Faunce and Cameron Stewart, in the 5 September issue of the Journal (MJA 2005; 183: 261-263). Two words were omitted from the title. The title should read “The Messiha and Schiavo cases: third-party ethical and legal interventions in futile care disputes”. The html and pdf versions of the article were corrected on 8 September 2005.

Thomas A Faunce · Cameron Stewart

We need to acknowledge the inevitability of death to have some choice in the manner of our dying The tragic story of Maria Korp, the Victorian woman with severe irreversible hypoxic brain damage after an alleged murder attempt, has been prominent in the Australian media over the past few weeks. The clear, considered, and humane intervention by the state’s Public Advocate to authorise the cessation of artificial feeding has drawn both widespread praise, and some condemnation, especially from right-to-life activists.1 Once again, care and decision-making at the end of life is in the public arena. Earlier this year, world media attention focused on a young American woman, Theresa Marie Schiavo, who had been in a permanent vegetative state for more than 15 years. A prolonged legal and political battle in state and federal jurisdictions of the United States eventually led to the cessation of tube feeding, and her death. Interestingly, there was broad agreement between the courts and medical opinion that feeding should stop.2 In the preceding November, a much less publicised case was played out in Australia. The Supreme Court of New South Wales ruled that treatment could be withdrawn from Isaac Messiha, a man whose life was supported by ventilation and tube feeding, after he had experienced severe cortical brain damage resulting from a cardiac arrest. Faunce and Stewart review the Messiha and Schiavo cases concerning treatment abatement (a term adopted by Weir3 to encompass both stopping and not starting treatment) for incompetent persons (page 261) and weigh up two options for dispute resolution: an institutional clinical ethics committee ruling, and a judicial declaration on futility.4 Although both may occasionally have their place, basic process questions need to be posed by clinicians5 (Box 1) before recourse to external arbitration. It is noteworthy that in neither case was an advance directive in place. An important difference between the two cases lies in the time that elapsed after catastrophic hypoxic brain injury before treatment abatement was considered — years for Theresa Schiavo, and initially only 4 days for Isaac Messiha. It is clearly essential that abatement decisions should not be made prematurely. They should only be made after the patient’s failure to improve has been demonstrated over a period of observation and care that is widely agreed (by appropriate specialist neurological opinion, and supported by any relevant clinical evidence) to be reasonable for the diagnostic category concerned (stroke, post-coma unresponsive state, or brain death). Patients in a post-coma unresponsive state (previously known as permanent or persistent vegetative state) constitute a small subset of those who are incompetent to make medical decisions for themselves, and can be further subdivided into those whose condition is the end-stage of a terminal (albeit slowly progressive) illness (for example, the Victorian BWV case6), and those who are the victim of anoxic insult or trauma and are being maintained by nutritional support indefinitely, as in the Messiha and Schiavo cases, and the United Kingdom case of Anthony Bland.7 Leaving questions of advance directives to one side (their uptake rate has been poor nearly everywhere), Australian health legislation is not obviously helpful with the Bland-type cases, whereas some headway has been made with the first subset, as seen in the BWV case, and the drafting of the Consent to Medical Treatment and Palliative Care Act 1995 (SA). Whether the underlying condition is progressive or static, nobody should be locked indefinitely into an existence on life support, often without consent, and usually with no prospect of recovery. Treatment abatement decisions for those who are unable to speak for themselves should usually be resolved where they traditionally have been, between clinicians and families or duly appointed agents. Recourse to public tribunals and courts should be minimised, reserved for situations of intractable disagreement, if only because such processes address, but can also encourage, adversarial style mediation. Reducing the amount of futile medical treatment and introducing the timely deployment of appropriate palliative care to all who need it should be our preferred process. In bioethics, the concept of “futile” treatment has had a rough ride, mainly because of the inevitable uncertainties of medical prognostication. However, the “prognostic paralysis” described by Murray and colleagues is a real challenge,8 and we cannot ignore the fact that medicine has its limits. Despite polls reporting a widespread public pragmatism about death and dying (“I would never want to be a vegetable”, “When my time comes I do not want to be kept alive artificially”), when clinicians do try to discuss treatment abatement with patients and families, they often meet disbelief, even hostility. Clearly, polls reflect public attitudes as distinct from personal situations. In personal health care encounters, the idea that cure is improbable or impossible, or that continued life support is inappropriate or unkind, is unacceptable to many families. The wider problem here is that acknowledgement of the inevitability of death, and preparation for it, have largely lost their place in our culture. For many, an almost child-like faith in medicine and science has taken its place. We need to take up the challenges, and solutions, offered by health-promoting palliative care (Box 2).9,10 We need to shift from seeing the treatment of dying people, and the maintenance of those who are permanently unconscious but biologically alive, as “curative”. Instead, treatment of dying people with curative intent should be seen as an inappropriate and unkind obstruction of the natural dying process (given that our natural biological inheritance is to die) and a misuse of medicine.11 Thus, we should first try to save the lives of those who are sick and injured, but when this is no longer a reasonable prospect, the goals of care need to reflect that reality (Box 3).12 Mere emphasis on individual choice, important as it is, is not enough. A wider social understanding about the anticipated results of treatment of the dying and comatose person is essential, not medical heroics or legal and moral gymnastics. Health care workers and society need to move beyond curative domination and a view of death as medical defeat or failure. We need to question the place of death in the culture and processes of hospitals and aged care facilities, where most of these treatment abatement decisions occur. Appropriate care and decision-making at the end of life can only occur when death and the dying process are acknowledged, worked with, and regarded as an integral part of modern health care. Research into policy-based approaches, such as advance directives13 and care pathways for the dying in hospitals,14 is important. Results of their evaluation in Australia are eagerly awaited. In the meantime, many hospitals in Australia still do not have adequate consultative palliative care resources. When in place, and adequately funded, they can assist with imparting bad news, adapting to impending death, providing holistic care for patient and family, and with the transition, where appropriate, to community-based palliative care, or a palliative care bed. Evidence concerning good practice in communication about these issues is now well established.15,16 Death and dying is everyone’s business. Good clinical practice, integrating all we have learnt about communication and support for patients and families facing death, will go a long way to easing these tough journeys. But clinical approaches are not enough. We need to work with the policy-makers to place death and loss back on the public health and community agenda. We cannot control the fact of death, but we can have some influence on the manner of our dying. Medicine can make a wonderful contribution to quality of life until death; and it can make it miserable. This choice is ours. 1 Key questions to be addressed by a health care team if treatment abatement is considered Are the clinical facts of the case well established? Is the diagnosis correct? Has sufficient time elapsed to be reasonably confident that there is no reasonable prospect of substantial improvement or recovery? Is there consensus among the clinicians about the diagnosis, prognosis and most appropriate course of medical action? Is a case conference necessary? Identify the key decision maker(s) in the family, or friends. Have the patient’s family, carer(s) or legally appointed agent been advised of the above? Have they had a chance to express their opinions, and been involved in the decision-making process? Has the patient’s general practitioner been involved? Has the abatement decision been documented? The plan for implementing it may involve a “time trial” of continued life-sustaining treatment. How will subsequent objections to the decision be dealt with? Has a consultative palliative care team referral been considered? 2 Goals of health-promoting palliative care Provide education and information for health, dying and death Provide both personal and social supports Encourage interpersonal reorientation towards a “natural” death Encourage reorientation of palliative care services towards public health ideas of prevention, harm-reduction and community participation Combat death-denying health policies and attitudes 3 Goals of care Curative (“beating it”) Cure or durable remission Prognosis: years Palliative (“living with disease, anticipating death”) Disease incurable and progressive Prognosis: weeks, months (but can be years) Terminal (“dying very soon”) Death imminent Prognosis: hours or days Modified from Ashby and Stoffell.12

Michael A Ashby MD, FRACP · Allan Kellehear BA, PhD · Brian F Stoffell PhD

Randomised controlled trials are often not feasible or not appropriate in palliative care research In evaluating evidence for clinical care, study designs are graded according to their potential to eliminate bias,1 and the most robust evidence is considered to come from randomised controlled trials (RCTs).2,3 However, the reliance on study design as the main criterion for credibility of evidence has its critics,4 as does this view of what constitutes the “best” evidence.5,6 In public health in particular, there is debate about the primacy of the RCT for evaluating interventions and about the tendency to downgrade the contribution of observational studies.7,8 More recently, this debate has moved to emerging research areas, such as palliative care. This discipline urgently requires a wider evidence base, but acquiring this evidence presents particular problems. Evidence in palliative care researchIn palliative care research, methodological difficulties arise because of the complex physical, psychological, existential and spiritual problems faced by patients, families and professionals.9-13 These difficulties include patient recruitment, gate-keeping by professionals (ie, reluctance to enrol patients in research studies), small sample sizes, high attrition rates, rapidly changing clinical situations and limited survival times.10,12,13 Palliative care research often focuses on the effectiveness of services for populations, rather than the effect of treatments on individual patients.9 Trials of palliative care services are almost entirely pragmatic (ie, they compare a new service with current best practice).13 The difficulties in identifying, recruiting and retaining patients mean that study populations often comprise those who are best able to cope and least ill. As palliative care is by its nature holistic and often tailored towards the needs of individual patients (pain relief and improved quality of life), it may be difficult to define the intervention precisely and uniformly. Palliative care is also characterised by a multidisciplinary approach. It can be difficult, and possibly also inappropriate, to isolate an individual intervention from a multidisciplinary approach. In addition, treatments that involve various components, changes in services, and surgical or radiological interventions are harder to deliver in a blinded manner to all concerned. Because treatment packages are the mainstay of palliative care research, the ideal type of RCT is seriously compromised.13 It is also important to reflect on the outcomes that we wish to assess. In general, the outcomes of RCTs are to reduce mortality and morbidity and improve survival.14,15 However, extending life is not the central aim of palliative care services, and duration of survival may therefore be irrelevant. Instead, symptom management and health-related quality of life are important outcomes. The timing of measurements is also crucial for trials, yet timing in palliative care is problematic because of the short time between eligibility and death.13 Furthermore, RCTs have been considered inappropriate or unethical in palliative care.9 They are seldom acceptable to patients and their families, who may not wish to risk reducing the quality of life in their remaining days in a trial with a non-intervention arm. Deliberate withholding of support services from the control group has been deemed unethical,16 and it is difficult for researchers to easily gain control “within ethically defensible limits”.13 For example, the Cambridge Hospital at Home study compared 186 patients randomised to receive up to 2 weeks of 24-hour nursing care when nearing death, with 43 control patients on an intention-to-treat basis.17 Problems included the limited power of the study to show differences, service resource constraint of 2 weeks, doctors not wanting to withdraw a desirable service before a patient’s death, 39% of the intervention group dying before receiving the intervention, and the control group receiving an alternative good nursing service. These problems made it difficult to show the worth of the intervention. A new system for classifying evidenceIt is difficult to grade published studies in palliative care using the traditional taxonomies for levels of evidence. Our recent literature review during the preparation of evidence-based guidelines for palliative care in aged care18 revealed numerous problems; many publications fell into evidence levels III (non-randomised comparative studies) and IV (case series),15 and many of the studies could not have been ethically conducted as RCTs. Consequently, to ensure a consistent, defensible approach to evaluating the available studies, we adapted traditional taxonomies in accord with recommendations of the National Health and Medical Research Council (NHMRC).19 We scored studies for quality of methods used to minimise bias, strength and relevance and, based on these scores, defined two new levels of evidence — qualitative evidence and consensus opinion of experts in the field (Box). Although some may consider these levels of evidence less rigorous, we believe that, given the limitations of the study designs, they are the most appropriate criteria for assessing evidence to guide palliative care practice. Alternative approaches to study designThere have been calls in both public health and palliative care for study designs to incorporate the social, economic and political factors that usually influence the effectiveness of the intervention.4,5,14,20,21 The NHMRC has recognised that clinical practice guidelines may improve health more readily for the relatively health-advantaged than for the relatively disadvantaged, potentially increasing health inequalities.22 In response, the NHMRC has developed a framework for incorporating evidence about socioeconomic position and health into these guidelines.14 The tendency for evidence classified as “best” (based on study design) to have been gathered on simple interventions and from groups that are easy to reach in a population raises issues about its relevance and transferability to other groups. Assessing evidence on multiple dimensions would better allow these issues to be taken into account For example, it has been suggested that evidence on the effectiveness of public health interventions should be assessed on three dimensions, similar to those we devised for palliative care interventions, namely: strength of the evidence, which is determined by a combination of study design (level), methodological quality and statistical precision; magnitude of the measured effects; and relevance of the measured effects to the context in which the intervention is to be implemented.4 A pragmatic approach is recommended when considering the importance of study design relative to the other dimensions.4 Study design should not be seen as synonymous with quality of evidence, as it is only one aspect. There are many useful observational designs, including, in particular, prospective open-label studies.23,24 These have a more realistic methodology for palliative care research, with each patient acting as as his or her own control, and data compared before and after the intervention. For example, the efficacy of ketamine as an analgesic was investigated with a prospective, multicentre, unblinded, open-label audit: 39 patients received a 3–5 day continuous subcutaneous infusion of ketamine, in addition to their existing analgesic regimen.23 Patients who achieved a 50% or greater reduction in mean pain scores were designated responders. The responder rate was 67%. A second trial on 43 patients in eight centres found a responder rate of 51%.24 The authors concluded that such data can be used to inform practice, if input and output data are rigorously recorded, and patients act as their own controls.23,24 Quality improvement methods are emerging as a way of obtaining evidence in palliative care. These methods involve stating an aim, measuring success, and testing possible improvements, for example through a PDSA (“Plan, Do, Study, and Act on new insights”) cycle. These cycles can generate deep understanding of complex systems and make sustainable improvements rapidly.25 Although RCTs have their place whenever possible,10,26 the above alternative designs may offer more feasible research protocols that can be successfully implemented in palliative care. If studies are to be fairly and accurately graded for the development of evidence-based guidelines, a second look at this taxonomy is warranted. Rating system for qualitative evidence This system was devised by the Australian Palliative Residential Aged Care (APRAC) project to classify qualitative evidence.* Studies were scored for: Quality of evidence (quality of methods used to minimise bias): This was assessed with eight questions, each with a yes or no answer (scored as 1 or 0, respectively): Was the aim of the study clear? Was the paradigm (philosophical and scientific approach, such as logical positivistic, qualitative) appropriate to the aim? Was the methodology (overall qualitative approach, such as phenomenological, grounded theory, critical theory) appropriate to the paradigm? Were the methods (eg, sampling, data collection, analysis) appropriate to the methodology? Could the rigour of the study be established? (ie, were the methods explicit and transparent, did researchers make explicit their own beliefs, did the analysis search for “negative” cases?) Did the sampling strategy address the aim? Was the data analysis appropriately rigorous? Were the findings clearly stated and relevant to the aim? Strength of evidence (magnitude of intervention effect): 4 = very high; 3 = high; 2 = low; and 1 = very low. Relevance to APRAC project (relevance of outcome measures and the applicability of the study results to the clinical question): 4 = very relevant; 3 = relevant; 2 = of some relevance; and 1 = of little or no relevance. Studies were classified as: Level QE (qualitative evidence) and were considered appropriate for development into guidelines if they had a quality rating of 6 or higher (out of a total of 8) and both a strength and a relevance rating of 3 or 4 (out of a total of 4). These studies are usually descriptive and include detailed, rich and “integrative” analysis, including observational or case studies. Level EO (expert opinion), if they contained no quantitative or qualitative evidence, but provided information about best practice from an expert or experts in that field, as agreed by the project team. Because expert opinion is generally the result of experiential knowledge, it was considered helpful to the development of the guidelines and, accordingly, was included in the preamble for each chapter. However, as it was not research-based, it was not used as the basis for any guidelines. * The first edition of the APRAC guideline document was made available for public comment.18 This description is based on the second edition, currently undergoing evaluation by the National Health and Medical Research Council.

Samar M Aoun PhD · Linda J Kristjanson PhD

Story-telling can help doctors cope with the great catastrophe of illness and death Recently, I was involved in the diagnosis, suffering and, ultimately, death of my friend and patient, “Christie”. When I began to write about this experience, I thought that I was writing her story. But soon, I realised that this is my own story. Narrative, a recital of facts in the first person, has been used as a tool for people who personally experience illness. However, I believe it can be used by doctors as they try to understand the illnesses and sufferings of their patients. Christie’s storyI met Christie in my daughter’s school playground in 1989. She had recently arrived from Melbourne, and, apart from having daughters of the same age, we shared many interests. There was an instant spark. Several years after we met, I opened my own general practice and Christie came to see me as a patient. When I asked her whether she would be willing for me to do her Pap smear, she remarked that had we not already been friends, we would have become friends. She was such a warm, friendly and outgoing person that this theory of hers was probably right, although I think that when someone has been a patient first there is more reserve in the doctor–patient relationship. In September 2000, I fled the sporting mania of the Sydney Olympics and went to New York with a friend. We wined and dined, went to live theatre, saw all the tourist attractions and climbed the World Trade Center. It was a wonderful holiday. It was an abrupt return to reality when, on my first day back at work, I learned that, in my absence, my colleague had seen Christie — and had found a lump in her breast. The biopsy report was on my desk. I knew as soon as I read it that she was going to die. There was not one redeeming feature. The tumour was anaplastic, there were 38 positive nodes in the axilla, and the tumour was oestrogen-receptor negative. Not only did I anticipate Christie’s early death but I also realised that I was going to have to play a difficult, painful role in the process. Already, my self-pity was threatening to overshadow my grief for my friend and her family. The next three-and-a-half years were, for me, a tragic example of the way an aggressive tumour can destroy a human being. Christie, of course, handled the whole affair with flair. She had surgery, radiotherapy and chemotherapy. She passed through an era of hats and scarves that hid her hair loss. Through it all, she remained cheerful and optimistic. I do not try to hide the truth of a difficult prognosis with my patients, but do make an effort to break the news gradually. I also think it important to maintain hope and optimism. So, for me, making sure that Christie understood the hopeless nature of her cause was incredibly difficult for me. After the initial flurry of medical intervention, there was a period of relative calm. For about 12 months the only medical treatment Christie received was trastuzumab (Herceptin), known to slow the growth of oestrogen-receptor-negative breast cancer. She resumed her previously hectic social schedule, and her friends would tell me how wonderful it was that Christie had made such a great recovery from her breast cancer. My secret knowledge ate at me like a personal malignancy. She came to see me as her doctor again in May 2002. She had just had a routine follow-up CT scan and wanted to discuss the result with me rather than her oncologist. There was a mass of enlarged lymph nodes in the left supraclavicular space. The cancer was back. I broke the news as gently as I could, but she was devastated. Her fear for the future was written all over her face. I referred her for radiotherapy and she went through another period of intensive treatment. Without complaint, Christie suffered the accompanying fatigue and the skin burns. This period of intense treatment was followed, once more, by relative calm. I did not know which of Christie’s initial visible fear or her later cheerful front was the more difficult for me to witness. But the gaps between crises were shortening. The next problem arose less than six months after the radiotherapy. Christie was getting short of breath. A simple chest x-ray revealed the problem — fluid in the left side of the chest cavity. A day-trip to hospital was all that was required to drain the fluid, but pathology analysis confirmed the presence of malignant cells. The cancer was on the march again. In July 2003, I made arrangements for my own family to have a holiday — two weeks in the surfer’s paradise of Angourie, on the north coast of NSW. On my last day at work, Christie came to see me. This time, she was really in trouble: she had a constant burning pain in her left arm and marked weakness. The cancer had begun to invade her brachial plexus. Christie wept uncontrollably in my office. I held her and comforted her as she explained the frustration of having a useless arm. She couldn’t cook or hang out the washing. She couldn’t do up her bra or pull up her underpants. I did what I could for her neuropathic pain and referred her to the pain clinic. Then, I went on holiday. During that holiday, I spent many moments thinking about what Christie was going through. Sometimes when I was enjoying a moment in the sun, a walk on the beach, a card game with the family and, once, as I was pulling up my underpants, I thought of her and wept. I wept for her pain and frustration, for the bitterness of terminal illness in those too young, and my frustration in being able to do no more than observe, pity and weep. Over the next three months, I saw less of Christie. She was deep in the clutches of the medical machine. The most important person was her pain specialist. Every possible pain-relieving drug, including huge doses of morphine, failed to relieve her pain. Finally, her oncologist decided that depression was exacerbating the pain and she should see a counsellor. She went once, but informed the oncologist that, although the counsellor was lovely, she would find it much more helpful to talk to her GP. So began for me the most difficult period of all. Christie came to see me once a week. We spent at least half an hour together as she discussed the pain and practical difficulties of her situation, as well as the worsening prognosis. Sometimes we met at my surgery; sometimes I would go to her house. At about this time, she was going away for a weekend with her husband. I think they knew that the end was not far away and wanted some time alone. The day before they left was our counselling day. Christie told me how much she wanted to be sexy one last time for David, but how she was unable to get comfortable enough even to think about making love. Never before had I been required to help anyone with this dilemma and never had I felt so useless. In the following month, the cancer spread under the skin of Christie’s chest and the tumour broke through the skin, erupting into a foul-smelling sore. Nurses came daily to dress the wound and apply antibiotic gel to try to control the smell. I was unable to offer any way of preventing this from getting worse, and I was appalled at the ability of uncontrolled cancer to eat away at the flesh and dignity of such a lovely lady. Christie’s youngest child, “Henry”, who was seventeen, came to see me to talk about the way he was feeling. He had clinical depression. Although the management of his depression was within the scope of my expertise, it was beyond my coping skills. I referred him to an adolescent psychiatrist. Christie was severely distressed about her son’s depression and we discussed her guilt and grief about it. Her worry about dying and leaving the family was now compounded by her fear that something would happen to Henry. She felt it was all her fault. As a mother of teenage children, I knew what it was to worry about the effect that your life might have on them. I had spent a lot of energy dealing with the guilt that my commitment to my patients might have interfered with their capacity to become well-adjusted adults. Over Christmas 2003, Christie’s whole family went to their holiday house at Avoca on the NSW Central Coast. They rang me on Christmas Day and again the following day for help to try to keep her pain under control, but we all had to admit defeat and Christie went back into hospital. Finally, the decision was taken to install a ventricular pump to put narcotics and local anaesthetic directly into the central nervous system. The pain specialist had been promoting this idea for some time but Christie had been reluctant to submit to a procedure that was both invasive and irreversible. Thankfully, it was a successful exercise and, at last, her pain was controlled. Within a month of this step forward, Christie’s oncologist rang me. The tumour was spreading into the epidural space in Christie’s neck and the decision had been made to stop chemotherapy and admit defeat. Despite my knowledge at all times of this inevitable outcome, the news, when I heard it, made my heart race and my spirits sink. The end would arrive within a few weeks, and I was not ready to face that. As I grappled with this news, I found myself able to discuss the theoretical implications of certain types of treatment with the oncologist as though Christie were no more to me than any other patient. It made me angry with myself even while I recognised that I was displacing my anger at her impending death in the only way I knew. Christie died, aged 52. CommentaryIn a society that has attempted to remove much of the pain associated with living our lives, illness and death remain the great catastrophe. There has been a recent explosion in illness narrative — the telling of the facts that relate to a personal experience of illness. Broyard wrote: Always in emergencies we invent narratives. We describe what is happening as if to confine the catastrophe.1 It would also seem that, with patients, this may be because they need to reclaim their illnesses from our increasingly complex, technological and hospital-based health systems, which consider all illness within a biomedical model. Illness narrative can help patients to create meaning from memory, validate themselves as people in the role of patient, and reflect on the significance of the experience on their lives. It also helps them to come to terms with pain, whether the pain is physical, emotional or existential. Illness narrative may also have a therapeutic role to play in their illness, although this is not proven. In The Wounded Storyteller, Frank broke illness narrative down into three different types of stories — the restitution narrative (illness interrupts a life, is fought successfully and life resumes), the chaos narrative (no discernible narrative order, no happy outcome and the most difficult kind to read) and the quest narrative, in which not only does the patient overcome their illness but in the process something is gained either for the patient themselves or for the wider good.2 Chandler, in her essay on autobiography, describes three aspects of healing which flow from the writing: catharsis, restoration and transformation.3 These can be seen to fit into either restoration or quest narratives in the Frank model. Narrative can also be used by doctors. Hunter explains how, from the earliest days of medical training, doctors are taught to use narrative, both verbal and written, to understand and interpret the story of a patient’s illness.4 Medicine is fundamentally narrative...and its daily practice is filled with stories... Much of the central business of caring for patients is transacted by means of narrative... Medical stories are a well established way of sorting through and tackling problems of diagnosis and treatment... In such a scientific discipline it is surprising to find this unexpectedly familiar way of making sense of the facts. 4 True narrative, rather than case history, can be used to understand and explain the complexities of the person and their reaction to illness, as it affects their lives and the lives of those around them. Of course, the doctor will tell a different version of the story than the patient. The patient tells of the effect of the illness on a life, where the doctor tells, at least, the story of the identification and treatment, but perhaps can tell much more. In the same way that the 20th century has hospitalised illness, death and dying have also been taken out of the community and relegated to the hospital or hospice. Segal discusses the way in which the public sees death as part of the human experience, while the medical profession sees death as the failure of modern medicine.5 It is not only hard for patients and their families to face death and dying — it is also hard for doctors: The ability to cope with dying patients does not come easily. Society has not prepared one for such interaction.6 Medical education does not prepare doctors to deal with death and dying. Remen talks about the way in which medical training may even undo some of the inherent life skills that we have to deal with death and dying.7 The emphasis of modern medicine is on cure; and, in a narrative sense, doctors may only want to tell restitution stories. Accepting that death is inevitable for a particular patient usually invokes a sense of failure: People enter the medical profession to help; when they find that they cannot give good news, they often feel terrible and impotent and they tend to retreat.8 Further, discussing the issues that relate to dying and death is hard to reconcile with a professional relationship that emphasises the importance of an emotional distance between doctor and patient. Although there is a more general acceptance of death as a natural part of life in general practice than in hospitals, the myth that modern medicine can always find an answer persists for both doctors and their patients. Kübler-Ross found that specialists in her hospital were reluctant to refer patients to her program because to admit that the patients were dying was to acknowledge a failure to cure.9 It is true that “most of us learn to cope with the life and death scenario with denial”10; but there is a need for doctors to be taught other, better coping mechanisms. Dealing with the dying and death of someone close to you creates special dilemmas. Working with a dying patient can create a special relationship. Contact becomes more frequent as death approaches and there are more physical problems to solve. Contact often takes place in the patient’s home, which can create an emotional closeness, and there is often more involvement with the patient’s family members. McNamara wrote: Facing death, whether it be our own, that of someone we love dearly or someone we feel responsible for, presents us with a unique challenge... Inevitably the frequent contacts with dying people awaken some personal response...if you’ve given a bit of yourself to them, you lose that something when they die.11 Loss and disappointment are common experiences in the practice of medicine, and acknowledging this is important. I think narrative can be a good way to express the loss and at the same time to put it in perspective. Remen strongly believes that grieving is necessary, and not readily undertaken by doctors.7 Crying alone or with the patient is the method that she proposes. I believe that writing the story is another way in which the caring professional can come to terms with the grief and distress. I certainly found the writing of Christie’s story to be both cathartic and helpful in organising my memories. There is a strong sense in which writing it all down allows one to think about it less. Faber-Langendoen obviously shared that experience with me. Even though she was an oncologist and dealt regularly with dying patients, when confronted by the imminent death of her own mother she found herself ill-prepared to face the issues.12 She wrote a narrative as part of the “coming to terms” process, but failed to decide whether she had been able to successfully combine her roles as doctor and daughter. I believe narrative can also help professionals reclaim their caring role in the care of suffering patients. If doctors were to write more accounts of their dealings with patients, it would help people to better understand the issues faced by them as they attempt to manage the burden of sickness. And, doctors who do not write might take comfort from reading what other doctors have written.

Anne P Hellman MB BS

Is there something wrong with the way CPR is presently practised? “That doctor — he should be sacked!” An elderly gentleman was talking about me, and he was doing it on the local television news! My crime was to make the observation in a letter to the MJA that “. . . regular involvement in cardiopulmonary resuscitation (CPR) makes me wish the technique had never been introduced.”1 I had waved a red rag in front of bulls. To disparage CPR creates fury in those who, professionally or otherwise, see it as the reason for their existence. My wife had warned me that I would be painted as the bad guy, and, when this happened, my daughter asked cheerfully, “Is Daddy going to be like Pauline Hanson?”. My first inkling of the coming storm was on the Monday the Journal appeared. A Perth radio personality wanted to interview me. I was not told that, immediately before me, he would be interviewing the head of St John’s Ambulance in Western Australia. “Doctors Give CPR Shock Treatment” was the headline in The Australian. A flurry of phone calls from journalists followed. The local paper picked up the story, and over the next few days a local general practitioner, the local ambulance chief, a surf-lifesaving identity and an editorial in the paper all attacked my purported position. I had several conversations with the medical superintendent of the hospital where I was working: I was free to express an opinion in the MJA, and I was not being reprimanded — as some in the media wished. But, he indicated that he was going to publicly distance the hospital from my remarks, and reaffirm hospital policy — to commence CPR in an emergency whenever a person has stopped breathing or has no pulse. (I am grateful to this medical superintendent, who expended time and effort publicly defending the hospital, and defending me for opinions which — like those expressed here — are mine alone, and not those of the hospital.) The local television station made the topic their main story, and repeatedly replayed the clip of the elderly gentleman who had survived two cardiac arrests and wanted me sacked. The story finished with the words, “Dr Mackay declined to be interviewed”. I did not know I had been invited. Someone had received and declined the invitation for me! An advanced healthcare directive Should I have my cardiac arrest while going about my duties in the emergency department — immediate defibrillation please! And maybe a whiff of oxygen. (If I don’t survive, I will be quite surprised.2) Should I arrest in the hospital dining room, forgo the mouth- to-mouth (I am squeamish about these things). I may (grudgingly) accept some chest compression, until the defibrillator arrives. But if you have not got me back after three shocks — call off the circus. Go back and finish your lunch. If I arrest in the street, you will do what you will. But I won’t be happy. I doubt you will be able to get a defibrillator to me quickly enough. If I arrest at home, I know it will be very difficult for you to do nothing. But it will be 15 minutes before the ambulance arrives. And to end up brain damaged on a ventilator is something I do not want. (But if you are clever enough to call the ambulance so that I arrest after it arrives, by all means use the defibrillator.) When I am in a bed in a hospital ward “old and grey and full of sleep”, do not use your hands to commit violence upon me — use them to comfort me. I became a member of a hospital cardiac arrest team in 1973. Formally or informally, I have been part of such teams ever since. Two things I have learnt from this: there are things I do to patients that I do not want done to me; and, an advanced healthcare directive can never be found when you want one — so I hope I will be forgiven for placing mine here (Box). I would have attended at least a couple of hundred cardiac arrests. My guess is that, sadly, only a dozen or so of these people survived to leave hospital. (A meta-analysis of 39 studies involving 33 124 out-of-hospital cardiac arrests has shown a survival rate of 6.4%.3) Some of the survivors I remember well. While one middle-aged man was telling me about his chest pain, I noticed the cardiac rhythm on the monitor change to ventricular fibrillation. I charged the defibrillator as he continued to talk. I waited until he lost consciousness and then shocked him. In seconds, he was asking me what happened. Such episodes are not unusual in emergency departments (or in the back of ambulances). Of the vast majority who have not survived, I have a clear memory of only a few. I was visiting a patient at his home. He was telling me about his “gallbladder pain” when he had a cardiac arrest. His wife phoned an ambulance while I began resuscitation. When the ambulance arrived, his wife and I had a pink patient with small pupils. At that time ambulances did not carry defibrillators. By the time we arrived at the hospital, which was only a hundred yards away, the patient was blue, his pupils were fixed and dilated, and he could not be revived. It is difficult to maintain effective and continuous external cardiac massage while loading and unloading an ambulance, and while the ambulance is in motion. An editorial in the MJA in 2003 bemoaned the fact that “cardiac arrest is more successfully treated in Chicago or Heathrow airport, on an American Airlines or Qantas jet, or in a Boston post office, than in the vestibules, corridors or general wards of Australia’s premier hospitals”.4 A review of 28 cardiac arrests occurring at the Melbourne Cricket Ground (MCG) revealed a quite extraordinary survival rate of 71%,5 compared with a 3% survival rate from out-of-hospital resuscitation reported, at about the same time, in metropolitan Melbourne as a whole.6 Each minute from the onset of ventricular fibrillation to the use of a defibrillator results in a 10% reduction in survival.7,8 Thus, there is every reason to encourage anything that can shorten the time between the onset of cardiac arrest and defibrillation.9 But there is a big difference between the population of the MCG and that of a general hospital ward. The former has been able to get to the MCG, whereas the latter may be unable to get to the bathroom. Patients in a general medical ward may have failing hearts, lungs, kidneys and brains; they may be dying of cancer, they may be failing to respond to treatment for severe infection, or they may be otherwise very unwell. Most MJA readers will be familiar with the following scene, which takes place regularly in hospital wards. The curtains are barely closed around the bed of an elderly woman; two people are taking it in turns to rhythmically compress her chest; three doctors are attacking her oedematous limbs with needles, unsuccessfully attempting to insert them into veins; a fourth is poking around her groin trying to cannulate her femoral vein; and a fifth has a laryngoscope in her throat. But on this occasion, I notice something rather unusual (though I have seen it before). As I ventilate her lungs through the endotracheal tube, her eyes are wide open, her pupils are small, she blinks, she seems to be looking straight at me. Someone remarks, “She has a dying heart”. Eventually, we allow the rest of her to follow. In the past, nurses used experience and common sense when deciding not to use CPR in most patients when they died. Now, they are expected to start CPR on anyone who collapses and does not have a “not-for-resuscitation” order. This order is supposed to be discussed with the patient. This exceptionally difficult task may fall to the most inexperienced doctor on the ward. The results of CPR in this ward population are likely to be poor, even if immediate defibrillation is available (which it is not10). If cardiac arrest in a general medical ward is to be treated, could management be limited to prompt defibrillation, oxygen by bag and mask, and little else? The management of out-of-hospital cardiac arrest seems particularly prone to controversy. During the 1990s, ambulances regularly arrived at emergency departments carrying patients on whom cardiac massage was being performed. Subsequent discussion with relatives revealed that many of these patients had not had a witnessed cardiac arrest. They had been found dead. It was treating these patients that made me wish that the technique of CPR had never been introduced. In the five years since I wrote those words (and while the notes for this piece were gathering dust), it has become accepted that “. . . survival for the victim of cardiac arrest not resuscitated by a determined trial of advanced cardiac life support at the scene is negligible and not improved by further emergency department efforts”.11 Ambulance officers now have authority to cease resuscitation at the scene when it has clearly failed. This has reduced the incidence of futile resuscitation being performed in ambulances, which then has to be continued for a respectable period of time in the emergency department. But it may not prevent futile resuscitation efforts being performed in patients’ living rooms. An 85-year-old woman may phone “triple 0” after finding her husband collapsed on the floor. She may be advised to commence CPR. Sometimes, mightn’t it be quite reasonable for her to disregard this advice, and, when the ambulance arrives, to ask the paramedics to let her husband remain undisturbed? One hundred and five paramedics, emergency nurses, and emergency physicians who regularly took part in CPR were asked at what point they would like CPR stopped if they were the patient.12 Ten per cent did not wish to have CPR started at all; and only 3% wished to complete a full CPR protocol based on standard American Heart Association guidelines. Does not this suggest that there might be something wrong with the way CPR is presently practised? I was explaining to an elderly woman that her dying brother would be unlikely to last the hour. I asked if she wished to be with him when he died. Her husband turned to her and said, “ No. You don’t want to be there when they put the paddles on.” The assumptions behind this remark startled me. Should cardiopulmonary resuscitation be a futile deathbed ritual — a secular last right? There are many ways to die. To die without fuss, here one minute gone the next — that is the best.

Michael J Mackay MB ChB, MHA, FACRRM

The Victorian Supreme Court has decided that artificial nutrition and hydration provided through a percutaneous gastrostomy tube to a woman in a persistent vegetative state may be withdrawn. The judge ruled, in line with a substantial body of international medical, ethical and legal opinion, that any form of artificial nutrition and hydration is a medical procedure, not part of palliative care, and that it is a procedure to sustain life, not to manage the dying process. Thus, the law does not impose a rigid obligation to administer artificial nutrition or hydration to people who are dying, without due regard to their clinical condition. The definition of key terms such as “medical treatment”, “palliative care”, and “reasonable provision of food and water” in this case will serve as guidance for end-of-life decisions in other states and territories. The case also reiterates the right of patients, and, when incompetent, their validly appointed agents or guardians, to refuse medical treatment. Where an incompetent patient has not executed a binding advance directive and no agent or guardian has been appointed, physicians, in consultation with the family, may decide to withdraw medical treatment, including artificial nutrition or hydration, on the basis that continuation of treatment is inappropriate and not in the patient’s best interests. However, Victoria and other jurisdictions would benefit from clarification of this area of the law.

Michael A Ashby MD, FRACP · Danuta Mendelson MA, LLM, PhD

Specialist palliative care services and services involved in the pre-palliative phase of a patient’s disease must accept GPs as an integral part of the care team The number of Australians requiring palliative care is set to rise as the population ages. Although specialist palliative care services now cover most regions of Australia, rationing will be inevitable. Addressing the gaps and shortfalls to enable successful care of dying people will always require general practitioners to shoulder most of this clinical load. Unfortunately, specialist palliative care services report that some GPs are disinclined to continue to care for patients who need palliative care. They also report variability in the palliative care skills GPs possess, and struggle to work out how to support the GP colleagues whose care they perceive to be suboptimal. In 2002, the Commonwealth Department of Health and Ageing commissioned research to identify the barriers and propose solutions to this perceived problem. The outcome of this exercise provides a series of options for managing the engagement of GPs in palliative care.1 Most of the barriers to GP participation in palliative care are complex structural factors that will take some time to address (Box 1). GPs are increasingly opting for part-time work and there is a rising proportion of female GPs. In view of family responsibilities and safety issues, female GPs may have to consider their willingness to undertake home visits and after-hours work.2 For some GPs, regardless of gender, performing the time-consuming services involved in palliative care is becoming socially, financially and professionally non-viable.1 Practice costs, and the pressures arising from them, continue to increase. Several interim measures may improve GP participation in palliative care. Financial incentives (in the form of palliative-care-specific item numbers, or a substantial Special Incentives Program payment that recognises the intense work required in palliative care) may help. Items within the Enhanced Primary Care Program that encourage multidisciplinary care need to be simplified if they are to be used more often.3 For some GPs, exposure to only a small number of palliative care patients each year,4,5 combined with rapid advances in the evidence base for palliative care, undermines their confidence in managing patients appropriately. Given these disincentives, GPs may well ask, “Why should I be involved when there is a specialist palliative care unit in the district?”. Education providers, specialist palliative care services, governments and GPs themselves can all play a part in reinforcing the central role of GPs in palliative care. Defining a minimum set of palliative care skills to be taught to all doctors at undergraduate and intern level would ensure that all GPs have the knowledge and confidence to manage most common problems in palliative care. Medical schools should accept the challenge of embedding the national undergraduate palliative care curriculum6 into their programs. Currently, neither the national intern training curriculum7 nor the Royal Australian College of General Practitioners vocational training curriculum8 includes palliative care as a distinct entity. Many parts of both curricula could be covered by structured teaching of palliative care. Educational strategies aimed at established GPs should take into account the variable level of their skills and interest in palliative care. Such strategies include: reinforcing the core skill set, especially during vocational training; opportunistic case-based education, based on adult learning principles; accessible and available local teaching; financial support to attend educational sessions (including locum fee support); and funded longer-term placements for GPs interested in making palliative care a major part of their practice. Both specialist palliative care services and services involved in the pre-palliative phase of a patient’s disease (when the focus is on curative measures) must accept GPs as an integral part of the care team and work towards integrating GP input into patient care planning, patient review and management. Maintaining clear lines of communication between hospitals and GPs is important, but, unfortunately, not always done well.1 When patients are discharged from curative care, GPs need to be informed and their responsibilities delineated. Direct transfer of patients to palliative care units without keeping GPs informed and without giving them a defined role sends a message that they are not valued in this setting. Case conferences at the point of transfer can be useful. Furthermore, offering GPs responsibility during care planning and seeking their involvement in routine surveillance of patients during the pre-palliative phase (with clear protocols in place)9 might facilitate their involvement when patients enter the palliative phase of the illness. Specialist palliative care services should not take on the role of finding an alternative GP or acting as primary care provider for patients whose GP will not or can not accept this responsibility — rather, this role should be referred back to the GP.10 GPs, in turn, should accept this responsibility and embrace or initiate shared-care models (Box 2). Such models have been established successfully here and overseas.11-13 Divisions of General Practice could play a key role (not yet well exploited) in encouraging formal shared-care arrangements — only 9% of Divisions were involved in palliative care shared-care projects in 2002.14 A significant proportion of Australians are from minority ethnic backgrounds, including Indigenous Australians. Many GPs who care for people from minority cultural groups require cross-cultural training relating to issues of death and dying. Many GPs who care for people of their own cultural group, while understanding the barriers to care that different cultural beliefs may pose, nevertheless have difficulty reducing the impact of these beliefs. Some GPs and communities require assistance in participating in and benefiting from mainstream models of palliative care. Palliative care should be a rewarding part of general practice,15 and indeed the skills of good palliative care closely mirror those of good general practice care. It is essential that this core task is not diminished by, or lost in, the current rapid evolution of consumer needs, financial uncertainties, structural changes and increasing training imperatives. 1: Barriers to greater general practitioner participation in palliative care Structural barriers GP undersupply and uneven distribution Time constraints for adequate service provision Changing demographics (eg, increased proportion of female and part-time GPs) Safety fears around home visits Cost inefficiencies of providing quality palliative care Rising practice costs and related pressures Knowledge barriers Sporadic patient load Rapidly expanding knowledge base of palliative care Competing educational priorities Practical barriers to undertaking training (eg, time, cost, availability of locum support) Lack of structured basic training undergraduate curricula national intern training curricula culturally specific palliative care Service barriers Suboptimal planning of palliative care provision after attempted curative measures Lack of active GP involvement in care during curative phase or in transition from curative to palliative care “Specialisation” of palliative care Unclear role definition for GPs in specialist palliative care service environment or among multiple service providers with palliative care brief 2: Roles of general practitioners and specialist palliative care services in palliative care General practitioners Provision of contextual knowledge of patient, family dynamics, history of illness to team’s care plan Routine medical surveillance Early intervention to prevent or control symptoms Medical care of carers Specialist teams Provision of specialist advice on symptoms and treatment to team’s care plan Nursing and allied health services Pastoral care Access to inpatient admission Either GPs or specialist teams (by negotiation) Care coordination After-hours emergency care Bereavement surveillance of carers

Geoffrey K Mitchell FRACGP, FAChPM · Elizabeth J Reymond PhD, FRACGP, FAChPM · Barry P M McGrath MB BS, MPH, PhD

Jane Turner,* Brian McAvoy,† Karen Luxford,‡ Jane Fletcher§ * Senior Lecturer, Department of Psychiatry, University of Queensland, Herston, QLD; † Deputy Director, § Senior Project Officer, National Cancer Control Initiative, Carlton, VIC; ‡ Program Director, National Breast Cancer Centre, Camperdown, NSW. jane.turnerATuq.edu.au To the Editor: The Supplement on palliative care (15 Sep 2003) provided a welcome overview of this critical area of clinical practice. 1 Many of the articles emphasised the generalist nature of palliative care and the importance of multidisciplinary care and teamwork. Recently published guidelines2 now provide evidence-based information on psychosocial aspects of care for health professionals working in the field, as well as surgeons, radiation oncologists, medical oncologists, general practitioners, nurses, social workers, psychologists, psychiatrists, physiotherapists and occupational therapists. These are the world’s first comprehensive, evidence-based guidelines on the social, psychological and economic impacts of cancer and how these can be better prevented, managed and treated by health professionals. They cover the whole spectrum of cancer care, from diagnosis through to treatment and palliation. The guidelines are based on comprehensive and systematic reviews of the international research literature and an extensive consultative process to ensure their clinical relevance. Developed by the National Breast Cancer Centre and the National Cancer Control Initiative (NCCI) and funded by the Federal Government, the guidelines were approved by the National Health and Medical Research Council (NHMRC) in April 2003. The guidelines cover the most commonly occurring cancers: colorectal, breast, gynaecological, head-and-neck, lung, pancreatic, prostate and urogenital cancers, and melanoma and non-Hodgkin’s lymphoma. Recommendations for clinical practice are rated according to NHMRC levels of evidence.3 Four main areas are addressed by the guidelines: understanding the challenges of cancer and how people react; provision of care by the treatment team to all patients with cancer; referral for specialised care; issues requiring special consideration — culture, age, geography and sexual orientation. The guidelines were developed to assist health professionals in supporting adult cancer patients. This includes providing information and choice to patients, helping them deal with procedures and treatments, providing emotional and social support, ensuring continuity of care, and dealing with specific concerns that may arise, including anxiety and depression. The guidelines can be accessed at the NCCI’s website (www.ncci.org.au), or hard copies can be obtained from the National Breast Cancer Centre.

Jane Turner · Brian McAvoy · Karen Luxford · Jane Fletcher

Family focused grief therapy. David W Kissane, Sidney Bloch. Buckingham: Open University Press, 2002 (xviii + 254 pp). ISBN 0 335 20349 3. The mental health consequences of bereavement have long been recognised. However, the family context of grief has been relatively under-addressed and there is a limited research base to guide clinical interventions. The authors of this text have internationally recognised expertise in psychotherapy (including family interventions) and palliative care. They both have substantial clinical and academic backgrounds in psychiatry, and have a substantial body of innovative research in Australia into the psychological and psychiatric aspects of oncology and palliative care, including bereavement. Family focused grief therapy provides a scholarly overview of the research and theoretical basis of our current understanding of the impact of bereavement on the family. This work is highly relevant to many areas of healthcare and is particularly innovative in applying preventive approaches involving careful clinical screening and assessment of a family’s functioning and coping. Kissane and Bloch’s work identifying high-risk patterns of family interaction is an important and an internationally recognised contribution to this field. The authors successfully link a research framework and a strong theoretical base with practical clinical interventions to address a problem that frequently challenges clinicians. The provision of detailed clinical vignettes deepens the scope of the book and encompasses the complexities of family life and the realities of clinical practice. The examples are relevant to the broad range of cultural issues for families in the Australian community. The vignettes appropriately and sensitively recognise the multiple problems that many families contend with, but, at the same time, utilise an approach that recognises family resources. By doing so the authors walk an appropriately balanced path between acknowledgment of the significant adverse consequences of grief for families and individuals, and the resilience of many families. Underpinning this is the philosophy that family functioning and coping can be enhanced to protect the individuals who comprise the family, and that there are patterns of family functioning that can hinder recovery from bereavement. As a whole, the book demonstrates the relevance and importance of mental health approaches to this very broad area of healthcare, and the contribution that can be made by bridging the fields of psychotherapy and palliative care. While the book would be of particular interest to professionals working in oncology and palliative care, the research methods, the nature of the intervention, and the understanding that this work brings to family work, are likely to be of interest to a very broad range of clinicians. By bringing research into clinical practice, the authors have made a major contribution to this field. Brian J KellyPsychiatrist, St Vincent’s Hospital Darlinghurst, NSW

Brian J Kelly

Australia leads the rest of the world in developing the relatively new medical discipline of palliative care. Two of the many reasons for this are behind the genesis of this supplement: the mutually supportive relationship among the diverse centres for delivery of palliative care; and the high level of government support for palliative care initiatives over the past two decades. The supplement is jointly sponsored by the Australian Department of Health and Ageing and by Palliative Care Australia, an independent body representing all the states and their numerous palliative care institutions and programs. The supplement seeks to inform the health professions of the status of palliative care in Australia and to stimulate interest in the philosophy of palliative care among healthcare professionals, many of whom may be involved in the care of people dying from advanced disease. Specialised palliative care teams are composed of a range of medical, nursing and allied health staff and volunteers.1 While they are directly responsible for the care of a relatively small number of difficult patients, their principal role, for the majority of patients, is to support and encourage the care provided by primary and specialist healthcare services, to help assess the physical, emotional and spiritual discomforts of people with advanced illness, and to frame comprehensive and practical suggestions for care. A palliative approach can be adopted by every potential carer to help patients, families and carers work with the reality of imminent death and achieve the best outcome for all.2,3 The benefits of palliative care are not limited to the final days and weeks of dying. Palliative care is relevant to managing symptoms in many clinical situations and can contribute to care decisions early in the course of any eventually fatal illness (eg, advanced respiratory, cardiac or neurological conditions; HIV-AIDS2). It can enhance the wellbeing of people in aged-care facilities who, approaching death, risk being inappropriately transferred to an acute-care hospital and dying away from the place they regard as “home”. Palliative care physicians are generalists, comfortable in sharing care responsibility with medical and radiation oncologists, surgeons and other specialists, general practitioners, hospital and community nurses and allied health workers in hospital, home or hospice settings.3 Of particular importance are the interactions with GPs and with staff of aged-care facilities.4 Academic units in palliative care have encouraged both medical Colleges and university medical schools to promote palliative care as a discipline in its own right and have gradually made important contributions to the discipline’s evidence base.5 Specialist palliative care nurses are expert managers, assessing individual, family and home-care needs and taking action to ensure that such needs are met. They support and enthuse their generalist colleagues in positive and practical approaches to care. Some are skilled at defusing family tension or in caring for the desperately ill child or the young family coping with bereavement.6 The quiet confidence emanating from a well trained nursing colleague can sometimes do much to calm seemingly frantic or impossible situations. Allied health workers in palliative care exercise their skills in particular ways. Physiotherapists may give gentle massage; pastoral counsellors help with life review, and psychologists with assuaging anger and denial; social workers establish bereavement care or welfare support for affected family members; while volunteers are a vital pillar of many palliative care programs, reminding us of the importance of human support in dying. The teamwork evident in palliative care management is a model that many other disciplines regard with envy.2 In palliative care, the hierarchies of medicine are diffused; the value to the patient of the careful nurse, the attentive volunteer or the sensitive pastor may well exceed that of a physician’s prescriptions. Team care is comprehensive and continuous, addressing the full range of discomforts and suffering of patients and their families and friends, avoiding the gaps in support that can arise through changing phases of illness or sites of care. Potential barriers between hospital and home care are minimised by comprehensive discharge planning and the willingness of many team members to work wherever care is required and to facilitate home deaths where possible and desired.7 A recently compiled national planning guide for service provision, with suggested standards for the palliative care workforce and facilities,8 exemplifies palliative care’s innovative approach to promoting frugal and effective best practice.8 Palliative care has engaged successfully with complementary therapies, finding value in simple, safe techniques without abandoning a critical stance.9 New uses for old drugs and uncommon uses of drugs used in other fields of medicine can improve comfort for dying patients.10 The delicate and difficult matter of sexuality for old, frail or sick people is faced with a cautious and sensitive openness.11 Openly acknowledging spiritual need in patients may allow family members and also staff to begin to contemplate the awe and mystery of death.12 Palliative care still has a long way to go in areas such as improving services to Indigenous and ethnic communities,13,14 increasing regular contact with aged-care facilities, and accumulating an evidence base for palliative therapies. The contributors to this supplement are all leaders in the field. They invite your interest and encourage you to participate in ensuring that care of Australians with terminal illness is managed with skill, sensitivity and confidence.

Ian Maddocks MD FRACP FAChPM

Bereavement support is an integral part of palliative care. Grieving after loss is a normal process; however, some grief reactions become complicated and may seriously compromise the health of an individual. Routine bereavement care helps identify people at risk of complicated grieving. The burden of grief can last for years, sometimes indefinitely. People caring for the bereaved need to pay special attention to cultural differences, the burden of caring for dying children, and the special support needs of bereaved children and adolescents. Excellent resources to assist in grief management, including the expertise of palliative care teams, are readily available.

Ian Maddocks MD, FRACP, FAChPM

Sexuality is intrinsic to a person’s sense of self and can be an intimate form of communication that helps relieve suffering and lessens the threat to personhood in the face of life-limiting illness. Health professionals struggle to accept that people with life-limiting illness, especially older people, continue to be sexual beings. People facing life-limiting illness may appreciate the opportunity to discuss issues of sexuality and intimacy with a trusted health professional. Practical strategies to assist health professionals to communicate effectively about sexuality and intimacy include creating a conducive atmosphere, initiating the topic, using open-ended questions and a non-judgemental approach, and avoiding medical jargon.

Amanda J Hordern BN, MEd · David C Currow MPH, FRACP

Spiritual care is integral to palliative care, and palliative care experience in offering spiritual care can be a resource for the emerging healthcare interest in spirituality. Spirituality is best understood in terms of the web of relationships that gives coherence to our lives, uniquely identifying each person. In palliative care, responsibility for spiritual care is shared by the whole team, with leadership given by specialist practitioners such as pastoral care workers. The palliative care approach to spiritual care may, however, be transferred to other contexts and to individual practice. Spiritual care encourages and supports people in a quest for meaning and personal autonomy. It is offered, not imposed.

Bruce D Rumbold MSc, MA, PhD

Culture is a system of shared ideas, concepts, rules and meanings that underlies the way we live — and approach death. Cultural diversity refers to more than ethnic diversity: age, gender, sexual preference, capabilities, education, place of residence, and occupation (including the health professions) contribute to diversity of culture. Clinical decision making involves values and ethical principles, which are influenced by culture — not only of the patient but also of the carers and health professionals. Care of patients approaching death involves the whole healthcare system — but may need, from time to time, palliative care specialist input, including specialised cultural competence. Education and training of palliative medicine specialists in Australia needs to include a focus on cultural competence.

J Norelle Lickiss MD, FCHPM(RACP)

All Indigenous communities in Australia have a common heritage of loss. Indigenous death rates are much higher than those for white Australians. Indigenous people use healthcare services reluctantly, and palliative care services rarely. Cultural considerations that need to be respected include Indigenous understandings of disease causation, attributions of blame for sickness, the performance of ceremonies after death and the importance of dying on traditional lands. The involvement of Indigenous health workers in clinical care increases confidence in the healthcare system as a whole.

Ian Maddocks MD, FRACP, FAChPM · Robert G Rayner FRACGP, FAChPM

Of children needing palliative care, less than half have a malignancy. Most families will elect to care for their child at home if this is offered as a realistic option. The often protracted and unpredictable nature of the many illness trajectories encountered in paediatric palliative care requires an approach that integrates palliative care with curative care. Children bring added dimensions to the physical, psychosocial and ethical aspects of palliative care. Health professionals from both paediatric and palliative care sectors have skills and knowledge to bring to palliative care of the child.

Jenny L Hynson MB BS, FRACP · Jonathon Gillis MB BS, FRACP · John J Collins FRACP, FAChPM · Helen Irving MB BS, FRACP · Susan J Trethewie FRACP, FAChPM

Over the past 30 years, palliative care services have developed in an ad-hoc way in Australia and around the world. Community expectations for palliative care have grown in recent years. As palliative care has evolved, the World Health Organization definition of palliative care has changed substantially. The changes challenge those who are involved in planning, funding and provision of services to meet new expectations. Many services have not attracted adequate nursing, medical and allied health resources to provide interdisciplinary palliative care. A national consensus document (“a planning guide”) has been developed in consultation with key stakeholders and organisations. It outlines the minimum needs for service provision, independent of fundholders and models of service delivery.

David C Currow MPH, FRACP · Ellen M Nightingale BN, MSc

The growing demand for palliative care means that health professionals are expected to provide palliative care as a core part of their practice. Training in the practice of palliative care is a recent addition to undergraduate and postgraduate medical and other healthcare curricula, and several initiatives are under way to promote palliative care principles and practice in healthcare training. The challenge that we all face is how to develop these skills in the face of multiple demands on our time. Strategies for improving palliative care education include a national undergraduate curriculum for palliative care, expanded training opportunities for generalist practitioners, and further recognition for the role of practitioners of specialist palliative care and associated curriculum development.

Will Cairns FRACGP, FAChPM · Patsy M Yates PhD, RN

Palliative care teams have made an important contribution to improving the care of patients with incurable illnesses in Australian hospitals over the past 20 years. Collocation of hospital-based palliative medicine specialists with other specialties allows communication and exchange of ideas on issues relevant to the medical care of such patients. Shared management of complex cases maximises comprehension of patient distress and optimises the support provided during hospitalisation. Tensions arising across the interface provide opportunities for both groups to improve the relief of suffering in the acute-care setting. Palliative medicine in the private sector has some advantages, but specialists also face specific challenges, including the cost of certain drugs, access to the multidisciplinary team and reimbursement issues.

Paul A Glare MB BS, FRACP · Katherine J Clark MB BS, FRACP, FAChPM · J Norelle Lickiss MD, MSc, FRACP · Kirsten A Auret MB BS, FRACP · Ghauri Aggarwal FRACP, FAChPM · Sarah E Pickstock MA, MB BS, FRACGP

Teamwork is an integral part of the philosophy of palliative care. Cross-functional, interdisciplinary teams offer benefits to patients, practitioners and specialist areas of care. Leadership of teams can be difficult. With shared responsibilities, more than the sum of the competencies of team members can be offered. In palliative care the final decision-maker is the patient.

Gregory B Crawford MPHC, FRACGP, FAChPM · Sharonne D Price BA, BSocAdmin, GCertHlth

Providing adequate supportive services for the families of palliative care patients is a core principle of palliative care. Caring for a patient with terminal illness at home involves a considerable commitment on the part of family caregivers, and attention must be given to the caregiver’s needs as well as those of the patient. Although a home death may be preferred by patients and promoted by healthcare agencies as a cost-effective option, it may be an ideal that is not often realised. Enhanced supportive care strategies can ameliorate the challenges facing families of palliative care patients cared for at home. All health professionals need to improve the standard of family-centred palliative care, and more evidence-based approaches are required.

Peter Hudson RN, PhD

Home care is the preferred option for most people with a terminal illness. Providing home care relies on good community-based services, and a general practice workforce competent in palliative care practice and willing to accommodate patients’ needs. Structured palliative care training of general practitioners is needed at undergraduate and postgraduate level, with attention to barriers to teamwork and communication. Good palliative care can be delivered to patients at home by GPs (supported by specialist palliative care teams) and community nurses, with access to an inpatient facility when required. To optimise patient care, careful planning and good communication between all members of the healthcare team is crucial.

Kevin J Yuen MB BS, FAChPM · Margaret M Behrndt BSc(Hons), PhD · Christopher Jacklyn FAChPM, FRACGP, DipPallMed · Geoffrey K Mitchell MB BS, FRACGP

A palliative care approach has much to offer people in the advanced stages of neurodegenerative diseases, as well as elderly people dying from diseases other than cancer. Palliative care can be part of the treatment repertoire of any health worker, supported by intermittent consultation or referral to specialist palliative care services (eg, for management of neuropathic pain). A palliative care approach encourages a focus on pain and symptom management, and prompts more open communication about end-of-life issues. This approach recruits as necessary the expertise of specialists and multidisciplinary teams to encourage a flexible, responsive service. Home carers and healthcare providers require education to ensure a palliative approach that meets the physical, psychological, spiritual and social challenges facing patients and their families, and enhances dignity and quality of life.

Linda J Kristjanson PhD · Christine Toye PhD · Sky Dawson MSc

The availability of a variety of opioids, together with the discovery of new uses for old drugs (such as ketamine), assists individualised pain management in palliative care. Experience in palliative care provides reassurance that the effective use of opioids and sedatives does not accelerate the approach of death. In taking patient histories, recognising the spiritual component of life experience enlarges the focus of care. Interdisciplinary care brings many different insights to care situations in a prospective and cooperative way. Models of bereavement care established in palliative care units deserve wider implementation in medicine. An “experiential” model of medical student education encourages a focus on the whole experience of patients and their journey with their carers.

Phillip D Good MB BS, FRACP

Some complementary health modalities have found a well-accepted place in palliative care. The interdisciplinary nature of palliative care underlies the common acceptance of complementary therapies in this field of care. The experience of the interdisciplinary approach in palliative care may presage current changes in attitude towards complementary therapies in other areas of medicine. Growing collegiality and interdisciplinary teamwork in healthcare is encouraging the medical profession to see beyond scientific reservations and view complementary modalities as providing supportive roles.

Allan Kellehear PhD